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How Do You Know?

How Do You Know?Amanda, Sophie Muppet Theater, BillynWesley 011

Recently, in the whirlwind of doctor’s appointments, a doctor, who doesn’t know Sophie well and only sees her for a brief amount of time, stopped me in my tracks with the simple question, “How do you know she understands you?”  I haven’t been asked this directly in many years, and if memory serves me right it was a child who asked that question.  If I’d been asked this years ago I may have gotten short with the doctor, but she was clearly  very interested in Sophie.  As Sophie has aged, and the way our current health system typically runs, it becomes harder to find doctors that have the time to ask questions beyond the reason for the visit. In those brief times that are “allowed” by clinic appointments, say 10-15 minutes due to the pressures on quantity not quality in the healthcare system, it is almost impossible to understand my complex daughter’s issues, let alone understand her as a person.  Dr. H took some precious extra time at this appointment, clearly stopping herself from moving on to the next task to genuinely want to know HOW DO I KNOW.

First, let me give you some background about Sophie. Sophie is a non-verbal, medically fragile young lady who uses a communication device to speak and to run her precious DVD player.  Having autistic-like tendencies, most probably due to the lack of sensory input from her disorder, HSAN type 2 non-CMT, her social skills are not very good and she has a tendency to obsess on certain things, such as a segment of video. photo (2) She is what I call a “one word wonder” where she will say , for instance, with her talker “Christmas Eve” and then look at me. Being Sophie, she may say this 10 times if you don’t respond or aren’t paying attention to her.  I try not to assume I know, but will engage her in a some additional questions to find out what she wants, or if she is making a comment. She was requesting the Christmas Eve on Sesame Street DVD.

If you have been around kids who use talkers and learned how to use them years ago, they can be adept at wants and needs, but struggle with pragmatics and full grammatically correct sentences.  We continue to work on that, but that’s material for another blog post.  At doctor appointments I usually bring her DVD player, so that she can be occupied while I try to talk to the doctor.  It is one of those “super powers” that special needs parents learn- to be prepared with either another person to care for the child, or you learn to multitask to the 10th degree: paying attention to the kid’s emotional, physical and medical needs while explaining their issues and listening to the doctor’s recommendations.

Back to the doctor’s questions.

“How do you know she understands you?”

After years of being “joined at the hip,” for most of Sophie’s needs and wants I can be fairly certain what she is trying to tell me.  I do spend a lot of time reconfirming with her that I understood her request.  We are lucky that she can give us a yes or no clearly with her head.

She is able to point also, which when given choices that aren’t in her talker’s pages, or is too difficult for her to put together, she will select one.  Sometimes low-tech solutions work better.   We respect that she has something to say and honor all forms of communication. We go with the flow and have developed a sort of dance of communication over our many years together.

Sophie selecting a choice with her tutor and friend Julie

“How did you know what she was saying?”

Being the “one word wonder” , and taking the information in context to what is going on at the time, most of the time I am in-tuned to what she is most likely asking/telling/requesting.  She has in a way trained me to Sophie’s language.  I have learned to take in her body language and  verbalizations, the position of her head or the direction that she is looking.

An unspoken language.

I see this unspoken language in the Moms and Dads of friends who have kids with special needs.  It is even more profound with my friends with kids with very complex communication needs.  Those that “talk” with their eyes, with verbalizations, with switches, with sign language, with only a “yes”/”no” using not head shakes, but some other form.   It is a very sweet, very intimate look at a relationship.  I’ve also caught myself making assumptions and needing to “double back” and confirm that is what my daughter was saying.  I’ve learned to offer multiple explanations finishing with “or none of those?” For people who use communication devices, you learn to pause.  In our fast paced society this is an exceptionally difficult skill to acquire.  You develop  a tough shell when the people behind you are breathing down your neck as you try to help your kid explain something or make a request.  And I goof up all the time.  A very great communicator that works with special needs families and professionals in the field, Gayle Porter, said, “communication is messy.”  Yes, Gail, it is.  It’s sometimes fun, and sometimes rewarding, and sometimes frustrating and many times exhausting.

If you are just starting on this communication journey, you have many more options, many more communication systems,  many more professionals to help you.  I was incredibly lucky finding great people who helped us find Sophie’s way of communicating. Sophie is what is called a “direct selector”: she can use her hand (she uses a knuckle) to press the screen.  With help from a number of professionals, there are other options like eye gaze, switches, or alternative methods of scanning.

Our journey with communication began soon after we were trained by The Option Institute in the Son-Rise program.  The program typically tries to help kids with autism and other neurological issues to communicate verbally. They took us on anyway, knowing that this might not work for Sophie. We began with sign language and trying to get Sophie to form parts of words.  We greeted just about any verbalization as her wanting to say something, and made communication FUN, BIG, and EXCITING.  After a time we decided that in order for Sophie to communicate with the world, a communication device was a good choice.

Our Easter Seals had a group of speech pathologists (SLP) that specialized in AAC (Augmentative and Alternative Communication)  [http://www.asha.org/public/speech/disorders/AAC/] We had an evaluation done with a SLP who is an amazing diagnostician.  She is now teaching in the college classroom on how to be an exceptional AAC expert.  Sophie started on the Dynavox device.  Currently she’s on her 2nd talker, the Vanguard from PRC, but with specialized software using WordPower and many customized pages.  I have been her programmer with the assistance of the Easter Seals team.  Having a family member who is always with the user be the programmer has many advantages.  Changes “on the fly” are easily accomplished, you know the user better than anyone, and you have more opportunities to observe and tweak the system.  Beware of making too many changes, as the developers have specific reasons for how their core systems are laid out. One person in my opinion should make the changes, preferably with close collaboration with an SLP specializing in AAC.  I don’t feel that it is fair to the user to make them wait for days to weeks for needed changes.  Sophie’s current device is about done with its useful life.  It’s time to re-evaluate and we’ll need to move to a new device since hers is no longer made.

There are other systems out there. Since I am friends with a number of families with kids that need AAC, I try to absorb the various forms of AAC that are used and the reasons.  This helps me with making Sophie’s system better, and I can learn how the others use their language.  I’ve had the extraordinary opportunity to learn and attend seminars with Gayle Porter and Linda Burkhart regarding the PODD system.  I have a very good friend that has been deeply involved with Proloquo2Go and Proloquo4text from Assistiveware.  Google them, learn about them.  Attend trainings.  Become a part of the media groups that help others, such as PACT and ACOLUG and the Face Book group AAC-Alternative Awesome Communicators.  Ask questions. Get opinions. This will be a part of your life, don’t rely on others to make it happen!

If you are going with a communication device, in my opinion you must be sure the family is deeply involved with making it happen. No system is perfect for everyone.  If you can “play with it” especially with the user trying it prior to purchasing the device, you’ll get a better feeling if it is the right system.  It needs to be in front of the user as much as possible, and  there needs to be alternative means to communicate when the talker is not available.  Make it fun, make it exciting, make it POWERFUL.  Model what you would say using the talker, using THEIR LANGUAGE.  Do it again.  And again.  Setting it in front of the person and expecting them to just “get it” is a recipe for failure.

I find myself checking my understanding way more than I should.  I also assume I understand way more than I should. But that is all part of the dance.  When there is a window of time where Sophie and I can really connect and I can do active listening, really paying attention, it is a beautiful interaction.  And we understand each other perfectly.

I

misc pix and Make A Wish 1-2012 205

 

An excerpt of this blog was published in The Complex Child E-Magazine in September 2014. To view it please see:
http://editions.complexchild.com/sept2014.html

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